Information and Support
If you, or someone you know, have been affected by the issues raised in this programme, the following organisations can help:
Brain Tumour Charity
The Brain Tumour Charity offers a comprehensive information and support service to anyone affected by a brain tumour, led by an experienced, professional and compassionate team.
Services include an information and support line, local support groups, information days, online one-to-one support and online fact sheets. Call 0808 800 0004 or email firstname.lastname@example.org
The Brain Tumour Charity also funds scientific and clinical research into brain tumours whilst raising awareness and influencing policy. For more information, visit the Brain Tumour Charity site.
Brain and Spine Foundation
The Brain and Spine Foundation offers information and support on all aspects of brain and spine disorders, including resources designed especially for children. Its helpline is run by specialist nurses and covers all brain and spine conditions.
The nurses can answer questions about all neurological conditions, from the fairly common to the very rare, and can offer information and support on any medical or related social or emotional concern you may have.
Brain and Spine Helpline: 0808 808 1000
Brain Tumour Research
Brain Tumour Research represents the united campaign voice of the Brain Tumour Research group of charities. It was launched specifically to raise substantial funds for brain tumour research and operates as a separate entity to the member charities. Its website also offers information about brain tumours, symptoms and treatments, and details of support groups.
It is the only national charity in the UK that dedicates 100 per cent of its funds to continuous and sustainable scientific research into finding a cure for brain tumours.
Brain Injury Rehabilitation Trust
The Brain Injury Rehabilitation Trust (BIRT) helps people regain the skills lost as a result of brain injury – whether caused by road accident, assault, stroke or illness - to enable them to live as independently as possible.
Phone 01924 896100 for further information about BIRT and its services.
Headway is a charity set up to give help and support to people affected by brain injury. A network of local groups and branches throughout the UK and Channel Islands offers a wide range of services, including rehabilitation programmes, carer support, social re-integration, community outreach and respite care.
The charity’s nurse-led helpline is a free and confidential service available to anyone who has a question about brain injury, while the charity’s website contains information about brain injury and its effects, with free downloadable factsheets covering many of the symptoms and practical issues associated with a brain injury.
Helpline: 0808 800 2244
bibic is a national charity offering practical help to families caring for children who have brain-related conditions or learning disabilities. These include developmental conditions such as autism, cerebral palsy, Down’s syndrome, brain injury and other conditions like dyslexia and Asperger’s syndrome that impact on learning and development.
bibic therapists work closely with children, young people (aged 6 months to 18 years) and their families to help them tackle challenges affecting their social, physical, communication and learning abilities.
Telephone: 01278 684060
Breathe On UK
Breathe On UK is a national charity dedicated to supporting the families and carers of young people who are life-dependent on mechanical breathing, or long term ventilation (LTV).
Mobile: 07766 66 44 98
Intensive Care Unit Support Teams for Ex-Patients
The Intensive Care Unit Support Teams for Ex-Patients (ICUsteps) was founded by ex-patients, their relatives and ICU staff to support patients and their families through the long road to recovery from critical illness. They provide a range of resources and support methods, including a booklet called 'Intensive Care: A guide for patients and relatives', information fact sheets and local support groups.
Antenatal Results and Choices
Antenatal Results and Choices is a national charity providing specialised non-directive information and support to parents throughout antenatal testing and when a problem is suspected or diagnosed in their unborn baby. It offers help for as long as is needed whatever decision is made about the future of the pregnancy.
Services include a national helpline, a volunteer peer telephone support network, moderated online support forums and a range of supportive publications.
Helpline: 0845 077 2290 or 020 7713 7486 from a mobile
Genetic Disorders UK
Genetic Disorders UK is the national charity supporting families affected by genetic disorders.
Phone: 0800 987 8987
You can also find further information on the Genetic Disorders UK site.